Soon after diagnosis, the equipment starts flooding into the home and it just never ends. Here is a partial list of likely equipment that will float through the home during the disease process, in no particular order. Insurance, if it covers anything, won’t cover all of it.
– Bipap/AVAPS
– Nebulizer
– Trilogy
– Hoses and face masks and filters
– Tracheostomy supplies
– Oxygen tanks
– Backup batteries
– Battery chargers
– Generator
– Suction machine and supplies
– Formula by the case
– Wound care supplies
– Feeding tube supplies
– Feeding tube pump (aka Kangaroo pump)
– Cough Assist
– Breath Stacker
– Adaptive utensils
– Neck braces
– Wrist braces
– Compression socks
– Contracture boots
– Leg braces and canes
– Walker
– Manual wheelchair
– Power wheelchair
– Adaptive clothing
– Hospital bed
– Over the bed trays
– Supply carts
– Alternating pressure overlay or mattress
– Pain and anxiety medications
– Medications for a bowel regimen
– Urinals and catheter supplies
– Bidet
– Chux and baby wipes
– Hoyer lift and slings
– Sit to Stand lift
– Lift recliner
– Bath/shower chair
– Inflatable shampoo basin
– Speech Generating Device with tablet or computer
– Letter board
– Eye Gaze Device
– Personal Alert System
– “Nurse” call bells ranging from a hand held bell to a small muscle triggered alarm
– Baby monitor
In the 22 months from diagnosis to death, and for almost a year after, most of these lived in my house. I’m sure there was much more than this. I became an expert on medical equipment that most people have never seen outside of a hospital, let alone had to learn to use, maintain, program and troubleshoot. Caregivers and I figured out how to make equipment work together that the doctors and Respiratory Therapists said couldn’t – then we took pictures and made instruction sheets and took them to the doctors and RTs. When the medical professionals were at a loss, I reached out to my Facebook groups for ideas, then I googled for hours, ordered supplies from all over the world, trying to find something that would work and fit Mary’s needs.
